A Medical Quest

In Which I Am Given New Hope, Which Is Crushed a Few Days Later
Health and medicine explained.
June 18 2004 9:25 AM

A Medical Quest

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Illustration by Robert Neubecker

I've been looking for people to tell me about menopause. Early surgical menopause, to be precise. Women who have experienced it are obvious candidates, and I have talked to some of them and heard everything from "It's no big deal" to accounts of debilitating effects ranging from depression to utter physical collapse. But in the process of considering different strategies and calculating their relative chances for success, I want to talk to someone who can cite percentages and averages and, maybe, probabilities. This person has proven difficult to find. Most doctors seem reluctant to engage in discussion of anything beyond the main physical symptoms, dismissing accounts of cognitive difficulties and memory loss as "anecdotal," which is often medical-speak for, "We haven't studied it, so it can't be considered proved."

I think I finally have my woman when I locate Susan Bauer-Wu, a nurse scientist at the Dana Farber Cancer Institute. When we meet, she stresses that she is not an MD but, rather a doctor of nursing, "which is important, because I have a whole-body perspective."

Bauer-Wu speaks very carefully, softly, in well-formed, nonspecific phrases that give me little to latch onto. But what I ultimately hear from her is that menopause is everything I fear it is. She does not dismiss the cognitive and psychological problems, the depression, the memory loss, the difficulty with word-recall, and that feeling I remember so well from the postpartum year, the feeling of having all your senses padded with cotton. She also leaves me no doubts about the loss of libido: "It just happens to everyone." There will not be an exception in my case.

Women who undergo surgical menopause can have far more extreme symptoms than women who go through "the change" naturally, sometime in their 50s. This is probably because the levels of hormones, estrogen and progesterone, drop suddenly rather than diminishing over time, and also because the hormones disappear completely—while the ovaries of postmenopausal women continue to produce a little bit of estrogen for years. The discomfort of experiencing menopause while you are younger, when you are the only one among your friends who is having hot flashes, certainly doesn't help.

"Over time it gets better," says Bauer-Wu. Does she mean it actually gets better? No. "I can't say that women are living without symptoms. But it gets better to live with."

So, what if it were you? I ask. Or someone you love?

This is a very tough question. Bauer-Wu seems the kind of person who has opinions but doesn't believe it is often socially appropriate to share them. This is also what makes her answer, if she is going to give me one, especially valuable: It's not stock; she thinks about it.

"If it was myself or a family member," she says, "I'd help them look at the statistics. But they are just statistics. It all depends on where women are in their lives." Then she says something that surprises me. She says maybe some women shouldn't get oophorectomies, that maybe they should get regular surveillance instead. But isn't surveillance for ovarian cancer nearly impossible? No, she says, it can be done: There is a blood test, for a marker called CA-125, and there are always ultrasounds. She knows people who had ovarian cancer that was caught early and cured. This is an irony of ovarian cancer: Caught early, it is about 90 percent curable, but it is so rarely caught early that in fact it is 80 percent lethal.

In the afternoon I receive an e-mail message: "I've continued to think about this issue since we met this morning. I still think that close surveillance (i.e. CA-125 with vaginal and abdominal ultrasound every 3 months) is a reasonable option for some women, especially those concerned about quality of life issues after surgery. Of note, I doubt most insurance companies will pay for such monitoring." Setting aside the implication that there are women who are not concerned about quality of life issues, as well as yet another indication of the absurdity of insurance practices, this is the brightest ray of hope I've seen yet.

Bauer-Wu has suggested I contact Dr. Ross Berkowitz, professor of gynecology at the Harvard Medical School and director of gynecology and gynecologic oncology at Brigham and Women's Hospital. Dr. Berkowitz has a deep, lulling voice and a professor's measured pace of speech, which makes note-taking easy. I interview him over the phone, because he is a very busy man, and also partly because I hate going to Brigham and Women's, where my mother had her mastectomy and where her downward spiral began.

Dr. Berkowitz studies early detection of ovarian cancer. The symptoms of ovarian cancer are vague: an enlarged abdomen, diarrhea and/or constipation. The available screening tools are ultrasounds and the blood test for CA-125, which stands for "cancer antigen 125," and which is often elevated in women with ovarian cancer. The problem is, by the time the level of CA-125 becomes clearly abnormal, the cancer has usually spread. Dr. Berkowitz's lab has been working on finding additional markers, substances for which tests can be run alongside the test for CA-125. They have identified six potential candidates; articles on four of them have come out in medical journals in the last three years, and two more are forthcoming. The hope is that the large-scale trials now under way will show that at least some of these markers, combined with the CA-125 test, will add up to a real tool for catching ovarian cancer early.

All this considered, it comes as a shock when Dr. Berkowitz says that women at risk for ovarian cancer should get oophorectomies. Even women who are not yet 40, I ask? (With BRCA1, the risk of ovarian cancer first shows up at 40.) It seems to me that, given the advances in research that he has been describing, every year is likely to bring good news on early detection. "For a 37-year-old woman with the mutation," says Dr. Berkowitz, sending a chill down my spine, because, unwittingly, he is describing me, "as long as they've completed their childbearing, it's not an unreasonable option. It's not so rare for these cancers to be diagnosed before the age of 40."

But surveillance might be available so soon, I say, and the costs of surgery are so great. "You are talking about a disease that's 80 percent lethal," he responds. "And yes, hot flashes are unpleasant. And one needs to prevent osteoporosis, and you need to treat vaginal dryness in various ways—but I think death is worse."

I am sure Dr. Berkowitz is a wonderful man who truly wants to make sure women stop dying from ovarian cancer, but he makes me mad. A couple of days before talking to him, I speak with a woman, Sue Friedman, who describes being overcome with such profound fatigue after her oophorectomy that she could barely force herself to move around. Friedman is reluctant to tell me her story, because she is an advocate for women with genetic mutations—she founded and now runs Facing Our Risk of Cancer Empowered, or FORCE—and she basically thinks that oophorectomy is a good idea. Except two years after she got hers, she had what she describes as "severe life-altering fatigue." It took doctors a year to figure out she needed to be on hormone-replacement therapy, which is always a risk for a breast cancer survivor: It doesn't defeat the purpose of the oophorectomy, but the estrogen may make a recurrence of the cancer more likely. Friedman's fatigue was gone in two weeks, as were the joint pain and the depression for which she had had to be medicated.

"Mine is not the most common experience," says Friedman. But neither is it very uncommon. Even the women who fare very well say they have no libido—which, unlike vaginal dryness, cannot be treated. So, my hackles go up every time a doctor—especially a male doctor—mentions treating vaginal dryness. Somehow, this is always paired with the emphasis on whether or not a woman has, as they say, "completed her childbearing," and together this adds up to instrumentalizing the female body.

It's an old habit: Just 30 years ago, many American doctors were taught that any woman should have her ovaries removed once she has had all her children. As a measure for preventing ovarian cancer, this was utterly pointless: Even then, before any genetic mutations were discovered, doctors knew that ovarian cancer was rare in women who had no family history of it. In addition, the operation clearly raised the risk of many other conditions. The only clear explanation for the practice is that at that time, doctors generally thought of women's bodies as pathological.

I don't think this is part of the oophorectomy push for high-risk women today, but I think that the habit—the fact that it's a common, simple, often-practiced surgery—makes it easier to recommend. Oophorectomy is now done through a laporoscopy, and most women go home the same day. Contrast that with a preventive mastectomy, which lasts hours or, if it involves reconstruction, a whole day, and requires a hospital stay of at least four days.

Masha Gessen is a Russian-American journalist who is the author of Words Will Break Cement: The Passion of Pussy Riot and The Man Without a Face: The Unlikely Rise of Vladimir Putin.